# Perceptions and Willingness of Patients and Caregivers on the Utilization of Patient-Generated Health Data: A Cross-Sectional Survey

## TL;DR

This study explores how patients and caregivers feel about sharing health data they generate, finding that while they see benefits, privacy concerns limit their willingness to share.

## Contribution

The study provides new insights into the factors influencing patient and caregiver perceptions and willingness to share PGHD.

## Key findings

- PGHD is most used by those with chronic conditions and guardians of minors.
- Privacy concerns, especially for non-clinical use, significantly hinder willingness to share data.
- Younger adults are less willing to engage with PGHD due to heightened privacy worries.

## Abstract

Patient-generated health data (PGHD) enhance traditional healthcare by enabling continuous monitoring and supporting personalized care, yet concerns over privacy, security, and integration into existing systems hinder broader adoption. This study examined the perceptions, awareness, and concerns of patients and caregivers regarding PGHD and assessed their willingness to share such data for clinical, research, and commercial purposes. A cross-sectional survey was conducted from 6 to 12 November 2023, involving 400 individuals with experience using PGHD. Participants completed structured questionnaires addressing health information management, PGHD usage, and attitudes toward its application. PGHD was most commonly used by patients with chronic conditions and guardians of minors, with tethered personal health record apps frequently utilized. Respondents identified improved self-management and better access to information as key benefits. However, significant concerns about data privacy and security emerged, especially regarding non-clinical use. Younger adults, particularly those in their 20s, showed lower willingness to engage with PGHD due to heightened privacy concerns. These findings suggest that, while support for clinical use of PGHD is strong, barriers related to trust and consent remain. Addressing privacy concerns and simplifying consent processes will be essential to promote equitable and responsible PGHD utilization across diverse patient populations.